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Family and friends,
As some of you may know my daughter, Kassidé, was born with holoprosencephaly (HPE) in August 2021. HPE is an abnormal development of the brain that happens during the first weeks of pregnancy which causes the developing baby’s brain to not properly separate into the right and left hemispheres (halves). HPE ranges in severity and often causes facial development issues that results in her developing yet another rare birth defect (pyriform aperture stenosis), this is where the front opening of her nose is narrow due to an overgrowth in the upper jaw bone. Pyriform aperture stenosis is the result of her first diagnosis of the HPE fusion of the brain. Before Kassidé was six months old she had 5 surgeries with the hopes of helping her breathe. Unfortunately, they all were unsuccessful which eventually resulted in her needing a trach. Most cases of HPE are diagnosed by week 20/21 of pregnancy. With all these diagnoses, we knew absolutely nothing until the day after she was born. I was never labeled high risk, despite having gestational diabetes and high blood pressure. Making it extremely hard for me to prepare for what was to come next, six months of hospitalization, lack of care and humility from physicians, continuous ICU visits, numerous labs and blood draws, countless EEG’s, sleep studies and even more diagnosis that ultimately stemmed from the original diagnosis such as diabetes insipidus (hormone imbalance of the pituitary hormone, often triggering seizures due to the fluctuation in sodium levels). Kassidé has a long road ahead of her and I believe Dynamic Movement Intervention (DMI) therapy would greatly benefit her. DMI therapy has been shown to improve gross motor skills in children with Cerebral Palsy, Down Syndrome, and other neurological disorders. This therapeutic technique is used by physical and occupational therapists to treat children with gross motor impairment by improving and/or provoking a desired action with great emphasis on alignment, sensory integration and function. DMI has strong theoretical foundations and stays current with research and evidence-based practices. Kassidé development would greatly benefit from DMI therapy needing AFO’s (ankle-foot orthosis), leg immobilizers (to help her stand), arm immobilizers (to help her bare weight on her hands and arms), and needing a pediatric walker. There are several other countless devices that she will need that aren’t covered by insurance. Therapy will be three times a day five days a week for ten weeks totaling close to $30,000, including equipment. This is why I am reaching out, in hopes that we can raise enough money. Kassidé and I would greatly appreciate your support and assistance with raising the money to help cover the costs and to help Kassidé achieve her long-term goals.
As some of you may know my daughter, Kassidé, was born with holoprosencephaly (HPE) in August 2021. HPE is an abnormal development of the brain that happens during the first weeks of pregnancy which causes the developing baby’s brain to not properly separate into the right and left hemispheres (halves). HPE ranges in severity and often causes facial development issues that results in her developing yet another rare birth defect (pyriform aperture stenosis), this is where the front opening of her nose is narrow due to an overgrowth in the upper jaw bone. Pyriform aperture stenosis is the result of her first diagnosis of the HPE fusion of the brain. Before Kassidé was six months old she had 5 surgeries with the hopes of helping her breathe. Unfortunately, they all were unsuccessful which eventually resulted in her needing a trach. Most cases of HPE are diagnosed by week 20/21 of pregnancy. With all these diagnoses, we knew absolutely nothing until the day after she was born. I was never labeled high risk, despite having gestational diabetes and high blood pressure. Making it extremely hard for me to prepare for what was to come next, six months of hospitalization, lack of care and humility from physicians, continuous ICU visits, numerous labs and blood draws, countless EEG’s, sleep studies and even more diagnosis that ultimately stemmed from the original diagnosis such as diabetes insipidus (hormone imbalance of the pituitary hormone, often triggering seizures due to the fluctuation in sodium levels). Kassidé has a long road ahead of her and I believe Dynamic Movement Intervention (DMI) therapy would greatly benefit her. DMI therapy has been shown to improve gross motor skills in children with Cerebral Palsy, Down Syndrome, and other neurological disorders. This therapeutic technique is used by physical and occupational therapists to treat children with gross motor impairment by improving and/or provoking a desired action with great emphasis on alignment, sensory integration and function. DMI has strong theoretical foundations and stays current with research and evidence-based practices. Kassidé development would greatly benefit from DMI therapy needing AFO’s (ankle-foot orthosis), leg immobilizers (to help her stand), arm immobilizers (to help her bare weight on her hands and arms), and needing a pediatric walker. There are several other countless devices that she will need that aren’t covered by insurance. Therapy will be three times a day five days a week for ten weeks totaling close to $30,000, including equipment. This is why I am reaching out, in hopes that we can raise enough money. Kassidé and I would greatly appreciate your support and assistance with raising the money to help cover the costs and to help Kassidé achieve her long-term goals.